More of the Story: Finding a New Normal

There are days I could pinch myself, I’m so excited to welcome another baby. At the end of the day, all the blood, sweat, tears, and repetitive mess-mediation that happens ten times daily adds up to laughter, love, and all the good stuff in life. It’s a sweet gift to have one more child on the way to delight in, and one more layer of chaos to add to our already boisterous home.

There are also days I tremble at the sobering responsibility of raising four sons and three daughters; at the overwhelming mountains of laundry and dishes; at the thought of going through childbirth yet another time. My experience thus far is it doesn’t get easier with subsequent births. Each one is still impossibly hard, incredibly painful, and full of uncertainty and unknowns.

I’ve been fixated on the birth and how I imagine it will go. Because I was diagnosed with a pulmonary embolism at 10 weeks in September, and because of the treatment I require through and beyond the pregnancy, I am in the care of a high-risk OB group. My birth plan is quite a departure from all my others. It will be in-hospital, induced at 39 weeks, and strategically managed to minimize the risk of any further clotting issues. I have to say, I’m not really looking forward to the interventionist approach, even though I know it’s necessary for multiple reasons.

My OB oozes confidence that it will be a straightforward, successful vaginal delivery, saying I’m a great candidate for induction, given my history and obvious knack for pushing out babies. At one of my visits, she leaned onto one knee crossed over the other and reassured me of the most recent research about inductions and c-section rates. Looking around the exam room lit by fluorescent bulbs overhead, all I could think about was how impersonal the hospital felt compared to my midwife’s couch and carpeted floor. I am grateful for the doctor’s reassurance, but I know too much about the unpredictable nature of birth to put my hope in her words. Even if it all does go according to plan, that doesn’t mean it’s going to be an easy experience.

I know as well as anyone that my anxious thoughts do me no good, but they still hang around, especially in quiet moments when I don’t have something else to hold my attention. I often pray and ask for peace, knowing that even as it’s granted me, I still have to keep hold of it on purpose with both hands.

My 24-week old son nudges his way around my belly, and feel extremely grateful for his movement…a reminder that I’m not going through this experience alone. We’ll do it together, buddy. You and me.

Great love and great labor. That’s what I think about when preparing for birth. It’s going to be so hard, but love is powerful, and I love this little man.

***

I received my pulmonary embolism diagnosis around 5pm on a Monday. The ER doctor told me I was one tough mother to have dealt with the pain of a PE for over a week. I laughed, but I don’t think either of us thought it was very funny. It was a serious lapse in judgment on my part to suck it up for so long. The outcome could have been very different.

The doctors who spoke with us couldn’t give any definitive answers as to how long I’d be admitted to the hospital for, but said to be prepared for 5-7 days, or until they were convinced I was stabilized and they had the dosage dialed in for therapeutic, but not overly aggressive, blood thinning. My entire ER experience, though lame for the reason I was there, was much more positive than I would have expected. Each doctor, nurse, and tech was attentive, compassionate, and thorough in their care. There was one long stretch no one checked in with me, and I found out a little later, two strokes and a heart attack came in all at the same time.

The doc apologized for the wait as she burst through the door and told me very vaguely about the cases that had come in.

“No worries,” I said. “Those seem like pretty important cases to tend to.”

She said out loud I was important, too, and she was truly sorry I’d been waiting a while.

A little after five, they moved me into a patient care room on another floor.

The nurse encouraged me to order some food and began the rhythms that continued through the next 24 hours. Vital signs, blood draw, breathing into a plastic contraption to begin the rehabilitation of my lungs.

My husband was there to help me get settled, but planned a trip home to check on the kids, grab some stuff, and promised he’d be back later with my comfort and care items.

When I was there alone, everything started to sink in a little. I was truly not well, and even though it seemed like I should have known as much well before that point, I hadn’t admitted it to myself. I see it now in hindsight, and it has made me more aware of those around me who have themselves convinced they do not need care, a shift in their trajectory, or a change in the circumstances they’re in. Denial is a very powerful experience—and because of it’s deceitful nature, you don’t know you’re in denial until it hits you hard.

I had lots of questions and so did the doctors. They asked me at least half a dozen times to recall various things that may have contributed to the formation of the clot. Had I been sedentary for a long period of time? Had I flown or been on a long car ride? The only thing I could figure was it might have been a day at 8 or so weeks pregnant where my energy tanked hard and I spent most of the day parenting from my bed. I got up a few times to use the bathroom, and to get food for the kids, but my whole body felt heavy and worn out, and I decided listening to my body while growing a brand new human looked like taking a rest day.

No one can say definitively if that was it, but it’s the only thing I can think of.

One doctor mentioned briefly something about elevated estrogen being one cause of clots in the first trimester of pregnancy. I didn’t really have a context or understanding about it at the time but asked my high-risk OB about it at a later visit.

She explained the composition of blood being in a constant state of flux between coagulants and anti-coagulants…so your blood is always at the perfect viscosity to flow through your veins and also to not flow too well that it’s unable to clot effectively should you bleed. In pregnancy, estrogen levels are especially high in the first trimester, and it acts as a coagulant, thickening your blood ever so slightly, which in some cases (like mine) contributes to clot formation. She told me the other point at which estrogen is high is during the six weeks following birth, which is one way the body attempts to mitigate the blood loss after delivery. All that to say, even though I am healing from my experience in September, I’m not out of the woods yet.

The only recommended treatment for a pulmonary embolism during pregnancy is to have continuous blood thinning throughout the gestation and postpartum period, and only injection blood thinners are said to be safe for pregnancy because the chemical makeup of the injections involves molecules too big to cross the placenta. That means I’m being treated, but the baby is safe from any negative side effects. That also means I’ve been shooting myself in the soft skin of my stomach every twelve hours since September and will continue through May, at the earliest. It’s by far the most inconvenient part of this pregnancy, having to remember specific times to administer my shots.

I’ve driven home from the kids’ school more than once to pick up the syringes I failed to take with me, and we had to turn around an hour into a long road trip to come back for the zipper pouch I forgot to bring along for the few days we were going to be away. But, some things are important enough to be inconvenienced for.

The areas where most of the injections are concentrated have turned all shades of purple and green at different times, and the skin is a little tender to the touch sometimes as well. I’m glad to be more than halfway through this, but I won’t be sad when this no longer has to be part of my everyday routine.

Ultimately I was in the hospital for about 24 hours before they dialed in my dosage and thought I really didn’t need to be there. Most of the other patients on my floor were immobile, in much more dire circumstances than me.

Even though I’d only been gone from home a day and a half, I came home and everything was different.

In my absence, two generous friends had cleaned my entire house…like really deeply cleaned it. I resisted the urge to feel ashamed of the state they had found it in, as the first weeks of pregnancy, and the time that elapsed since my lung symptoms showed up meant I had let a lot of things go. It was a tremendous act of love for them to make sure there was as little left to be done as possible once I returned home.

My kids were glad to see me and cautious at the same time. They had a few details about what was going on with me, but lots of questions too. We were all in a bit of shock, navigating the bumpy terrain of a new normal. I had previously been a very involved and capable mama but was sidelined by very real physical limitations.

Other than no longer being at as great a risk of a recurrent blood clot due to continuous blood thinning, I didn’t feel much better/different than before I’d gone in. Except in extreme cases, doctors don’t actually do anything to remove clots or drain the fluid that builds in the lungs as a result of one. The doctors said my body would break down the clot on its own over time (2-3 months) and the continuous blood thinning meant it would be very hard for a new clot to form. They also said it could take 4-6 months for the pleural effusion (fluid) to resolve. I did have prescription painkillers to help me get some rest, but being a reluctant drug-taker even in extreme circumstances, I reserved those for nights and took Tylenol during the day. I could stand for only 5 or 10 minutes before running out of all energy due to reduced oxygen in my bloodstream, and as such, things got very simple around our house.

The first week home, I barely did anything at all. I didn’t make meals, I didn’t put children to bed. I didn’t even really go downstairs at all, where the laundry piles up and everyone else in my house sleeps. I was on the couch, propped with no fewer than a dozen pillows. It would be a full seven weeks before I’d sleep in my own bed again. I still had pain in the middle of my back where I’d felt the first symptoms, and breathing was still very difficult in any position except fully upright. The weird thing was, when upright and sitting, I felt really very fine. That made it challenging to answer questions about how I was doing whenever someone asked. I was great. Feeling fine, and not in too much pain…until I moved. It messed with my mind a little, not knowing how to really share where I was at or what was happening with my healing process on social media or otherwise.I mean, what do you say when you’ve nearly just died—a flippant retelling of the story in two minutes flat? I didn’t care at all who found out or how the news spread but I didn’t know how to share just sound bites of what was going on, and I was still trying to figure out for myself how I was really doing.

Prior to all these developments, my kids had done some chores here and there around the house, but most tasks were a group effort, with me leading the way, them responding to real-time orders in a team style rally to get things done. It’s what has always worked well for us.

Given my new physical limitations when I came home from the hospital, everything about how we operate as a family had to change. I had to lean on the older kids for much more physical help, which I’ve been hesitant to do in the past because sometimes its just easier to do things myself. They’ve responded so well—compassionate and understanding about what I can’t do on my own, and they’ve grown in their willingness and ability to handle some of the tasks that need to be done.

A side benefit of slowing down out of necessity was I started to see what was not working regarding our home care, systems, and my kids’ individual needs. Since I was knocked out of the equation from a physical standpoint, I could only direct, praise, encourage, correct without doing any heavy lifting.

It has helped me see just how capable my children are, that they will rise to whatever bar I set for them, especially when I am engaged, clear, and encouraging. Maybe that seems like a no-brainer, but it’s easy to slip into auto-pilot when managing a large household.

I started leaning on the older kids to help in specific ways. One day, I had the brilliant idea to turn dish duty into a relay, assigning one aspect of kitchen cleanup specifically to one child. Red plates go to E. Cups and glasses to A. Silverware and counter cleanup to J. Dishwasher start delegated to M.

I could come in at the end, spend 5 minutes and be square in the kitchen again because of my little bits of outsourcing. Pretty resourceful, if you ask me, and the kids were happy because they could each do their own little part in a few minutes’ time. Little bites do get you places.

We did some convenience foods, asked friends to bring a few meals here and there, and ultimately, Daddy played the hero, fielding all the stuff that needed to be done that I wasn’t able to do.

There were a few weak moments when I wondered how I’d survive it—the lowly dependence I felt; unable to carry what was mine to carry. Still, we have managed together.

It is incredibly uncomfortable to be the person in the midst of real and desperate need.

I have always been a very capable person—having both vision and follow-through, energy and tenacity. I haven’t had many experiences meeting my true limits. Anytime I’ve felt the pinch of an obstacle in front of me, I dig in a little deeper, try another way, learn a new skill, or let it go because I realized it wasn’t a top priority.

I can’t say I’ve ever had a challenge to overcome that I didn’t ultimately succeed at. Maybe I have, and I’ve conveniently forgotten my failures. I have been humbled by motherhood at many points, but never quite as this diagnosis has humbled me.

In childbirth, especially the precipitous, unmedicated ones I’ve had, there are always moments that feel impossible—when crushing pain overwhelms and there is no rescue but to press through it. For me, births have been wild, intense, and mercifully short. The longest out of the six so far was 3.5 hours, and one labor went from 3cm to child born in 45 minutes.

In contrast, it has been about four and a half months since the hospitalization, and while the experience healing from a pulmonary embolism doesn’t match the intensity of childbirth, it has leveled me in a more humbling manner than I’ve ever experienced.

There are moments I have thought to myself, I’m at the limit. This is all I can do. And then I’d look around at everything that was still undone around the house or the desires of my children I wanted to respond to with gusto, but couldn’t. There are moments I have felt desperately alone in the journey. But there have also been profound gifts. I am healing. My baby is strong and healthy. My family and I are all changed for the better. We’re working together, learning how to lean in to each other, even in weakness.

***

As I mentioned, I’m on injection blood thinners twice daily for the time being.

Around 35/36 weeks, I’ll switch to another type that will be 3x daily leading up to the birth, but the thinning agent is shorter-lasting and is something that can be counteracted if necessary when I go into labor to prevent excessive blood loss.

Most likely, I will have induced labor at 39 weeks, to hopefully avoid a precipitous birth in a location where I won’t have medical professionals available to oversee the process. I’m a little anxious about induction as I’ve had one in the past, and my body did not respond well to it. Timing the birth feels something like threading a needle. They don’t want me to be on blood thinners when I give birth, but they do want me to keep the window without blood thinners as narrow as possible. I’ll be back on within 6 hours after delivery.

I was told the pleural effusion could take anywhere from 2-6 months to resolve. I don’t know exactly when to mark it, but most of the time I don’t feel it anymore.

I sleep in my own bed, but still have an odd assortment of pillows to achieve comfort. I lay at an odd incline—not upright, but not flat either—and I’ve been using a rolled blanket along my back and a flat couch pillow under my growing belly to create a little valley to rest my hip in while I’m partially inclined. I can lie down flat for a while if I want to, but it still feels more comfortable to be slightly elevated.

Some of the things I’ve untangled in this time is that I spend energy in places I can’t afford to spend it. Because I’ve always valued relationships, conversations, helping others and being involved with things, I been accustomed to putting energy out in a lot of different directions. This season has required me to get very simple about absolutely everything. In the past, I have been the initiator in 90% of my relationships—happily so. I can’t do that anymore. It’s not a “don’t want to” thing…its realizing that sometimes outgoing energy is not something I can spare—not with a P.E. diagnosis, not with pregnancy, not with an extra-large family. Part of me still doesn’t want to accept that I can’t do everything I want to, but this is life.

I still love connecting and conversations, but instead of reaching out all the time (which I often have done compulsively to fill open spaces of time and quell feelings of loneliness), I’ve tried to quiet my soul, tend to the very basic things in my immediate field of view, and respond to those who reach out to me. I’ve thrown myself into writing, which has been a serious form of therapy. I’m writing more (and more often) than I ever have. I’m writing less for productivity’s sake and more for the joy it brings me.

I’m also preparing my heart and my home for the reality of seven children. It’s still a wild thought to consider the number of kids we have, but it makes me smile. There is a whole lot of goodness going on here, and though I’ve been humbled on many levels in the recent months, I’m full of gratitude for where we are and where we’re going as a family.

You’ll notice the family photo I included in this post…it is the first of many to come, one every week this year. I did a photo-a-week project with our whole family in 2014, and one a week with just the kids in 2015…but much has changed in that time, and I think we’re due for an update. That means you’ll hopefully be hearing from me about once a week on this blog if you hang around.

Thanks for being along for the journey, and for the ongoing encouragement you send our way. It is needed and deeply appreciated.